Our Strong Kid is WALKING!

We are a little overdue for an update.  There has just been so much going on.  I finally have a brief moment to share.  We have INCREDIBLE news for those of you who have not heard yet.  Parker's right foot is stable and he doesn't need the fusion surgery on that side too.  Everything that the docs at the other hospital had concerns about were related to his previous reconstructive surgery.  The heal concern was where the surgeon had rebuilt his heal structure and the place they thought was disintegrating was where a pin had been removed and left an open space (still healing).  This is a huge relief to all of us and especially Parker.

Our Jiffy Popcorn head going into surgery.

Also, last Wednesday, Parker had the spinal nerve stimulator trial surgery.  The surgery went well.  Unfortunately, it doesn't seem to be helping his pain, so we will continue onward.   The doc will remove it this week.  We know that Parker is completely disappointed, as he had hoped that this would be his ticket to get off narcotics.  But patience has definitely become a virtue he possesses and is applying once again.  We will continue to hunt for a pain solution.

Working hard at PT.

In the meantime, we are revving up for the big walk.  Parker is planning on "walking the walk"...this is huge.  He has worked so hard to get those feet, ankles, and legs working again.  He is going to stand tall as the National Walk Honoree this year!  His focus and determination has been remarkable to witness.  And we cannot wait to see all of you who can join us on May 7th and walk beside our kiddo.  There is still time to sign up for our team:  Click here to link to our walk page

And thank you to all who have donated to our team!  We are blown away by the support and it is heartwarming to see such love surrounding us.

Finally, we are counting down the days until Logan comes home for the summer.  He has completed his first year at UF and we are so very proud of his accomplishment.  His JA was a little mean to him in the beginning and with a little med adjustment and balancing of physical activity, he has been doing great!   We can't wait to have both our boys home for the summer.

Parker left this little bit of HOPE in my garden to surprise me!

Post-Op Report…Back on His Feet

Since November, I have felt like I have been functioning with heartache and moving in slow motion while the world around me whirls on in it's constant motion.  I finally feel strong enough to share this piece of my heart. (If you get sick to your stomach easy, don't read on...but this is what Parker endured and now lives with...it is real and painful.)

Parker has been in such a fight during these past 3 months.  He had his “surgery re-do” on his left foot.  We had no idea how much more extensive this surgery was going to be in comparison to his previous bi-lateral surgery that was done in March.  The surgeon had to restructure and realign his foot, ankle and tibia.  This meant bone turning, ligament and tendon tightening and lengthening, pinning bones once again, and inserting THREE titanium screws to fuse his foot into place.  The medical terminology for his surgery: Subtalar fusion (joint between talus bone and calcaneus bone is removed and joint surfaces are fixed together to decrease pain and improved function) with calcaneal osteotomy (cutting the heel bone and shifting it to correct deformity).  He endured a splinted cast (which adhered to his skin due to the blood and took 30 minutes just to remove), then a regular cast, then a boot cast with bone stimulators, and now he has a brace.

Just this last week, he has finally begun taking steps again.  He is so happy to be on his feet again.  Of course, his first few days of being able to stand, he way over did it.  He even danced some.  A tearful moment.  Then he went into a JA flare.  Another tearful moment.

These past three months we have seen him in more pain than I thought possible.  Week three through week eight were the absolute worst.  He is quite glad that now physical therapy (PT) can begin.  He was going to start PT this week, but yesterday we had to take him to the doc and they had us take him to the ER, where we spent the entire day/evening.  There was concern that he had pericardial effusion again.  He was having pain with breathing.  Such intense pain that it woke him that night.  His D-dimer blood labs were elevated which we found out could mean a blood clot.  After many labs, an EKG, x-rays, an echo-cardiogram, and a lung CT… he was cleared to go home to sleep in his own cozy beds.  Thank goodness all the tests were ok.

A few days prior to Parker’s surgery, a film crew came to video his pre-op appointment and our family to honor Parker at the Arthritis Foundation’s Night of Champions.  Logan went to the event in New Orleans to speak on behalf of his brother.  The event was the day after Parker’s surgery. Below you will see the video that the AF made to honor Parker. Parker is forever our champion. 

https://www.youtube.com/watch?v=MaDhldXe7PQ